Thursday, August 28, 2008

Rats'm Frats'm Blankety-Blank Seizures!

Just when I get to counting my blessings...

Joy had such a nice string going. The last knock-down seizure we'd seen was on July 31. That meant that we were closing in on 4 weeks, almost a month. When we hit a month, we were going to celebrate.

And then this morning, we had (in the words of Mama Mara) a "big blue-lipper." Fortunately Joy was in a stroller, so she didn't fall. But she did go stiff. And quiver. And stop breathing. And change color. And drool. And then felt simply wretched for the next hour or so.

Dagnabbit. There goes our party.

Well, still trying to count blessings here... last time we had an almost-month-long streak without any knock-down seizures, she then had SEVEN big blue-lippers on the day that the streak broke. Here's hoping that today's count remains at ONE.

11 comments:

Mama Mara said...

Dagnabit! I would have baked a cake for your party (if I had your address... and your dietary preferences/allergies ... and maybe a functioning oven).

Where are things with the meds cocktail? Are you topped out at the doses? I'm not telling you if and for how long Taz has been seizure-free -- too superstitious. I can tell you that my neurologist was tenacious about controlling the seizures, and I hope yours is too.

Gotta go now and find some wood to knock on.

AuntieS said...

I have everything crossed that can possibly be crossed (fingers, hands, toes, legs, eyes, ....!) that this was a one-time event for Joy. And, I might have to keep it all crossed until she reaches the one month milestone next month!! (Positive thinking!!) Of course, life might be a bit complicated this way, but I'm willing to do it if it will help Joy! I so wish you were able to figure out what it is that keeps the seizures away and what causes one like this to happen! Sigh!
-AuntieS

JoyMama said...

AuntieS - thanks for the crossings and the good thoughts, but do uncross your eyes and legs before driving anywhere, OK? Maybe if you braid your hair for us, that will count...

Mama Mara - hypothetical cake thoughts much appreciated! Maybe next month. Meanwhile, check your e-mail re meds (happy to have that conversation off-blog if that's OK with you).

Lynda said...

Oh Bummer! I was suspicious a bigger one was coming though when her little jerks were getting a bit bigger.
Question about the fever- Didn't Joy have a low grade fever for a couple days before her last big knock down after a long string of seizure free days?
Here's hoping it was an isolated seizure and more aren't on the way!

JoyMama said...

Lynda - Welcome, o Wonder Woman!
:-)

I went back and checked the daily reports from the end of April and didn't find any fever noted going into the end of the last seizure-free string.

Fortunately today was different than that last streak-ending, record-breaking day. Only the one big seizure this morning, and then several jerk-episodes that disoriented her but didn't knock her down. Coulda been much worse.

rhemashope said...

So sorry. Saying prayers for you and Joy tonight and hoping there are no more big blue-lippers.

therextras said...

Praying for y'all now and frequently. Barbara

AuntLO said...

I'm so sorry to hear that the party has to be postponed. I know you were looking forward to it. Here's hoping that this is the start of a brand new streak that's even longer.

Niksmom said...

Aw crap! I'm saying prayers for her to feel better and be seizure free! xo

Trish said...

So sorry to hear about the seizure and praying that there will not be another one.

Casdok said...

Will cross my fingers too.